Notes for consultant

Well, the day has arrived, today is the day that I am heading off to the hospital to see the consultant at last. Clearly, that left me with a problem as I can’t be in two places at the same time and although I am very aware that those with good eyesight and dexterity can now type up screeds of stuff on a smartphone, I’m not one of them. With luck I could be home by lunchtime, but I might as in the past be stuck there until this evening, either way, I doubt very much that I will be up to writing about what happened. Even without the stress of the consultation an outing via a stairclimber and an ambulance isn’t my idea of a restful way to spend my day, I will be totally knackered. Luckily, I had without realising it already written today’s post, below are the details that I am taking with me in the hope that the doctor will read it and gain a better understanding of exactly what is happening to me and then might actually be able to help me with something better than the medicines provided by my GP. I am aware that the doctor will already have my GP’s version of this, detailing all the medications we tried and that I am still on, so they aren’t mentioned below as I thought that wasn’t of importance when it came to my side of the picture. All I can do is hand it to him and hope that it has an effect other than being tossed to one side and ignored.

Following the array of tests carried out two years ago, nothing other than my PRMS was found to be behind the constipation and pain that I had been living with at that point for over a year. I left here being told to simply continues with what I was already doing, but the levels of pain kept rising, the pressure and discomfort kept increasing. I was spending more and more time in discomfort and totally unable to empty my bowels without again taking large quantities of laxative. Sena no longer worked at all even when taking 6 tablet nightly, so I had switched to Dulcolax which at first worked , although occasionally I had to take 2 a night for anything up to 4 nights, at that point I started increasing the actual dose, but with very mixed success.

In January, I found myself totally unable to pass anything although I hadn’t been to the loo for about 3 weeks, I admit that I had totally forgotten about it, but I had had no feeling to say that I needed to go at any point. I took a normal 2 Dulcolax and the next morning I knew that there were stools sitting lower in my bowel at last. I tried for over an hour to pass one stool, the pain was so bad that I was breaking out in sweats and feeling like I would pass out. I had no option other than to do something I find physically difficult, I had to reach around and then also insert a finger to try and break it up. When I did I was surprised to find that instead of the tube shape I expected, what I found was more like a bag filled with liquid and with three stools which had plenty of space to move around, they were very difficult to pin anywhere, but I did eventually manage to break up the biggest one. When I did it was really soft and broke with ease, I manage to clear all three which were all large & shaped more like a fist than any stool I was familiar with. Over the next three days with the use of 3 Dulcolax per night, I passed two or three more lumps each day, each was accompanied by a several hours of pain as they slowly moved across the top of my stomach and especially painful as they passed through the left-hand corner before gravity seemed to help them move lower. I still knew I wasn’t clear so I took 5 Dulcolax, which worked, but the pain was incredible, my entire intestine seemed to struggle in the whole process until again it passed the left-hand corner. Throughout the whole 4 days, I was leaking drips of fiber filled water uncontrollably.

From that day on I have had the same and worse problems despite my doctor trying to help with different medications, I now take 30mls of lactulose twice daily which has softened the stools making them more comfortable on their journey, but it is still painful frequently painful. I still have to take laxatives to make my bowels actually partially empty once a week, but it is rare that I feel it has totally cleared. For the last month and half, everything I have passed has been no thicker than a finger or pencil and varies from formed and comfortable, to a whipped cream consistency, but I am now caught in a spiral that is making life impossible.

The worst of the pain is over the top of my stomach with two points either side where the worst of the pain is centered. On the left it is as though there is something trying to push out from under my ribs, there are two points that it appears occasionally at the same time and frequently accompanied by what I would call a pulsing vein sensation. It is a sharp, crushing, yet cutting pain and causes a true feeling or pressure. The pain on the right is also just under my ribcage but is more a gnawing, sawing pain, which again has a strong pressure to it. It is normal that the two points are joined across my front by a band of pressure/pain. All of them act as a trigger to a problem that I have with both my diaphragm and intercostal muscles, when triggered they go into spasm and make it hard to breath beyond a shallow breath pattern, one that often makes me light headed. I also get strong points of pain low in my right-hand side of my abdomen and just to the left of my belly button, but there is a general ache across all of my abdomen a lot of the time. When things are at their worst, I can’t even bear to lay a hand on it as the pain is too much to stand for more than a few seconds.

Until January and for the previous 4 years I have slept between 12 and 13 hours out of every 24. I go to bed at 9pm and slept right through until 7:30am, plus took a nap of 1 or 2 hours every afternoon. Without that amount of sleep, my PRMS goes into overdrive and I am left feeling incredibly weak and ill. Since January, I haven’t had more than two or three-night sleep in a row, then 2 or 3 broken nights due to pain, which is causing loads of health issues and is a huge impact on my life. During the day, I am now nearly always in discomfort at best to true pain that breaks through all the pain control medications that I take for my PRMS. On days when the pain is bad I also spend much of the day feeling nauseous and I once again taking Metoclopramide most days at some point. Although I have never had success, I still always try to use relaxation techniques to realise the pressure and spasm, but when the pain at its worst, I have in the past few months been taking more of my 10mg Morphine booster pills, frequently they haven’t been enough and I am left still in a lot of pain. I am aware that Morphine along with my other drugs will be playing some part in the constipation, but life without them would be unbearable. The combination of the pressure from my guts and diaphragm spasms is now causing pain over my kidneys and something is without a doubt interfering with my ability to empty my bladder or hold onto its contents at times. This too is an issue that I have had in the past, but it had settled for quite a while, now it is becoming increasingly annoying to say the least.

It appears that the nerves that move food through my system are not working correctly, which my GP is in total agreement with, I believe that there are also areas that go into spasm meaning even when there is pressure from behind to shift the stools they can go nowhere due to the spasm ahead. Which is why laxatives have more success in causing me pain rather than making my bowels empty. Once the stools actually make it to my lower bowel, they normally leave me with no problem, it is getting them that far through me that is the real issue. I have tried suppositories as well as laxatives, but they come with two huge issues, firstly getting them into me, frequently, I simply can’t reach, add in my poor dexterity and the whole process is highly frustrating as well as difficult. The second is the painful one, suppositories trigger spasm that run from my rectum to my vulva, it is like someone grabbing me with pliers, gripping tightly and twisting. The pain also goes deep inside and I can’t break it in any way.

I am now more a grazer more than eater, but I am careful that the majority of what I eat contains fiber, which not being a meat eater is easy and that I drink at least 2 liters of liquid every day. I am also careful that everything is caffeine free. Even with all the care I take, even small quantities of liquid can be enough to turn a quite spell into discomfort or worse, as in the last 4 weeks my actual stomach seems to have joined in. There is no guarantee ever as to what I can eat or drink at any given time of day. Almost everything just increases my discomfort, but I do eat enough to more than just keep me alive. My mobility is poor, something I can do nothing about, but I still try to move around as much as I can within the house, even when sitting I do my best to move my upper body around in the hope that the changing position helps with letting things move inside. Even when I sleep, I know that I move very little and spend the entire time night or day flat on my back as I can no longer turn myself, not even onto my side by myself.

My average day is now spent in a mix of pain and discomfort from my pelvic level right up to my throat, as each spasm seem to trigger others, there is no relief, even after going to the loo if I am luck I might get about half an hours peace before it starts all over again as the contents of my gut move forward to replace what has gone. Over the last 4 months, it is clearly getting worse and worse, I am at a total lose as to what to do to relieve it.

Fingers crossed, when I write tomorrow I will have some news as to what happens next, I do have a horrid feeling that it is going to start with more tests, but I don’t have the slightest idea what they can do that hasn’t already been done and trust me, I will be fighting the whole idea of another endoscope as I can’t see how it will help spot nerves that aren’t working. It isn’t the endoscope itself that I have a dislike to, it’s not comfortable, but not as bad as you might think, it the two days before of not eating then drinking the most disgusting substance known to man. I have never once managed to drink it all and I don’t know how anyone could. Until tomorrow then……

Read my blog from 2 years ago today – 19/05/13 – Happily facing mortality

Adam managed to get a few hours overtime yesterday, so I had an extra day to myself as he went in to pull records for Mondays clinics, it seems that the NHS are just as bad as many companies are at managing the number of staff on holiday, but still having enough to do the work should anyone go ill. I hate to blow my own trumpet, but I had that one beat…..

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